thymectomy - how much down time?
 

HI Everyone,

i have had LOTS of time to think :confused: lately and to try and figure out how to handle the illness of MG. My neuro is strongly encouraging me to have a thymectomy.

i'm wondering how long are people with MG are usually down for after this? How long does it take to get back on your feet as the disease is going into remission? How many people out there have expirenced the disease actually going into remission? How many have found that the disease actually gets worse when the thymus is removed?

I am just starting to build my life on my own and i don't want to go through this surgery but at the same time i hate not being able to have energy and the severe doubble vision and other forms of severe weakness.

I am also wondering if age has a factor in the success of the surgery? what is the oldest anyone has had this surgery done and what is the youngest age? I am currently 24 years old.

honestly i'm just plain out scared of the surgery and i need some reassurance that things will be ok if i were to have it, or the honest truth if things aren't typically ok. I want to be able to continue on with my life afterwords and I need to have hope that things will get better with such a dramatic treatment. my thymus is hyperplasic (enlarged) but there are no visable tumors on the cat scans.

I just got out of the hospital a few weeks ago from breathing difficulties and i am also wondering how many people have had to be reintubated after the thymectomy b/c of a myasthenic crisis? Did you have a history of myasthenic crises prior to the surgery?

So many questions and hopefully a few answers will be roaming around out there on the intenet from people who know what it is like to live with the debilitating weakness day in and day out.

Do the benifits actually out weigh the cons???:eek:

RE: Thymectomy
 

Hi Bob.... our daughter came down with MG symptoms last June, only 2 weeks before her 21 st birthday. After blood tests and a cat scan of her thymus, the MG diagnosis was given to us. We were shocked as she had rarely been sick throughout her life. Her symptoms were mainly trouble chewing and speaking at that time. She was diagnosed with mild, general MG and they found that her thymus gland was enlarged and hyperplasic (hyper active). We went to MG specialists at loyola (in Illinois). They said she had a 90% chance of remission after a thymectomy. The reasons they said this could happen is because 1. she was diagnosed early 2. she is young and otherwise healthy 3. she had an enlarged and hyperactive thymus

Anyway, we found the best possible cardio thoracic surgeon who also did the da vinci robotic surgery and scheduled it. She went in on Oct. 5, 2007 for the surgery. They made 3 tiny incisions on her side and removed the thymus. She came out of the surgery very well and was groggy the first day... but she was HUNGRY and was given a dinner tray that evening. She was given meds for pain and the next day, they removed the chest tube which they put in to make sure the lung doesn't collapse. (I'm not a doctor, just a mom) ... anyway, they say this is the worst part of the operation..taking out that tube.... it was not a big deal for her at all...it just felt wierd when they took it out... but it only lasted about a minute. After that, she was a lot more comfortable. She was able to go home the very next day! She is a senior at college and didn't want to miss much school. She only missed 3 days of school! Her surgery was on Friday... she came home on Sunday... on Monday, she rested and I fed her some favorite foods. She was a bit bored so we took her to the Mall and I pushed her around in one of their wheel chairs so she didnt get tired out. She loved it. The next day was wednesday and she was up and around but I made sure she did her breathing exercises with the little plastic gadget they gave us at the hospital. You have to blow into it and keep the little ball up as long as possible. This is VERY important to do... this gets the lungs to expand after the surgery and you must do this faithfully to make sure the lungs get back to where they were before the thymectomy. On Thursday we went for a quick check up at Loyola and the doctor said she was doing great. She was taking only mestinon about 5 - 6 times a day ... a full tablet. She had no classes on Friday so she had only missed tues, wed, and thursday of classes. We took her back to college on Saturday and warned her to take things slow. She was taking 19 credit hours! Anyway, it's January now... only 3 months after surgery and she is down to 3 mestinon per day and feeling pretty good. Some days, she doesnt take any mestinon if she isnt doing too much. They say that some people get a bit worse after the surgery due to all the stress on the body.... she did pretty well. Basically, we are now waiting and hoping for a remission which the doctors say could take up to 1 - 2 years. Anyway, this was just a synopsis of our experience... I don't want to pretend it's a piece of cake but, the surgery was not as bad as we had feared. We did find the BEST doctor who had great knowledge about this surgery. That is so important. I know many people who have also had the sternectomy surgery and they have done well also. Everyone is so different...that makes it hard for anyone to give you advice. I wish you the BEST of luck and hope to hear how you do as you decide with your doctors and family what the best treatment is. Our daughter is glad she had a great surgeon and that this part is behind her ...
Best Wishes and Best of Health to you.

Hiya BCR

I had a thymectomy back in 2003, I was down for about 6 weeks, and all went very well. I think I was quite lucky in that respect. I think the thing I found hardest was the pain, and dealing with that along with the mg with things like getting out of bed, and other general self care things, I was 32 at the time.
I was terrified of the surgery, I had only just been diagnosed with this awful disease, and the surgery on top of that didn't help, but as I said all went well, and I'm glad I had it. I do wonder what I would be like if I didn't have it?!?!?!?
Feel free to ask as many questions as you like, and if you want to email me to just talk or question me let me know and I'll put my email up for you(I dont leave it on my profile all the time)
redtail

Redtail Hi!

How have your MG symptoms been after the thymectomy? What medication(s) do you take? Have you experienced a remission yet? I know it takes time but I have heard from people who have gone into remission after surgery where they don't need ANY meds. Have you ever had to have any other treatments such as IVIG or Plasmaphoreses? Thanks for any info... I'm always trying to learn about MG so I can help my child.

Hiya BRQQK, am always happy to help anyway I can!!
I always do wonder if my symptoms would be worse if I hadn't had the thymectomy!?
I started off on high doses of pred(60mg daily) and mestinon 60mg 4xdaily and timespan at night, and azathioprine, I have since been changed to cellcept(am just starting my
4th month)am down to 17.5mg pred alternate days and on 2 60mg mestinon daily.
I have had several IVIG, no plasmaphereses, the last ivig helped me alot, gave me a huge boost, wish I could have it whenever I think I need it not when the neuro thinks it will help.

When I look back on how bad I was, I'm so much better now. Before I was diagnosed I had weeks of constant double vision, could hardly get out of bed.
I use to get home from work and have a glass of milk for dinner(didn't have the energy or muscle function to prepare a real dinner, wouldn't have been able to eat it either, as I had trouble chewing and swallowing) and go to bed at 6.30pm and sleep til 10 the next day!! Its nice to look back and see I was much worse then.

I still struggle now, dont have a job at the moment, and some days like today(I had a migrane last night) I find it hard to type, and am tired, and wont drive, as its to hard.
I saw my neuro last friday, he said he hopes oneday I will be off my prednisolone and mestinon!! I can only hope.
Hope I havn't woffled on to much, feel free to ask any questions if I havn't answered something.
redtail

I can only hope.
Hope I havn't woffled on to much, feel free to ask any questions if I havn't answered something.
redtail[/QUOTE]

I appreciate you sharing your info with me as to meds and symptoms...It always helps to learn from others as they go on the road toward better health.... and to me, it sounds like you're getting there! Let's hope for better times and also for modern science to get to the bottom of this disorder. I've been told that MG is one of the most understood neurological disorders and I read any article I can find online about the advances they are making...it's a slow process (too slow for me), but hopefully one day soon we will see progress! Hang in there... you give me hope for my daughter.

Just wanted to see how you are doing.......
 

Hello! Just wanted to see if you decided on the thymectomy and how you are doing. I was diagnosed March 6 and had a thymectomy April 22. I have my good days and bad days, but overall feel much better. After the thym, I thought I would die from the pain and was taking pain pills like they were going out of style (7 a day per my doc), but slowly improved.

I am still on lots of meds, but my steroids have been reduced from 80 mg. a day to 20 mg a day and I take less Mestinon.

I spoke with my oncologist the other day and he believes that I am in remission - I am cautiously optimistic.

When you get a chance, please let me know how you are and if you have decided anything!

Take Care,
Erin

By the way - I was down about 6 weeks after my thymectomy............Hope this helps!

6 weeks? Care to elaborate? BRQQK75 made it sould like a walk in the park and you are saying its a nightmare....

-J

The difference is in how the thymectomy was done. BRQQK75's daughter had it done via the small incisions under the ribs - very non-invasive. People with a 6 week down time had their sternum's split so the surgeon could directly view the thymus and remove it entirely. Size of the thymus, any masses on it etc all go into the surgeon's decisions for approach. http://www.umm.edu/mg/surgery.htm

hth

Brian.